Tuesday 15 October 2019

The Transplant Situation

Strap yourselves in this might get personal. I went to see the surgeon today. I don’t write about this a lot because of its personal nature and its lack of scope for comedy. So - spoiler alert - I’m having a kidney transplant.

This is the third time I have seen the surgeon in the calendar year of 2019. The first time was in January when I was at 10% kidney function and had spent large parts of Christmas Day asleep in my old room at my mum’s house. I’d also spent a day in early January at A & E at Whiston with heart palpitations which I had thought were linked to my previous in the field of high potassium but were not. They sent me home reassured that my kidney function had not altered significantly but without a satisfactory explanation as to the cause. I was signed off work for a month.

It was around that time that I first met Mr Ridgeway, the transplant surgeon. Dan. I can’t get used to calling him Dan. Because I don’t know him well enough it makes me think about Stephen Mangan’s character in that episode of ‘I’m Alan Partridge’ where Alan thinks that he and Dan have become friends only for Dan to blank him in that cringeworthy scene in which Alan just keeps shouting Dan’s name.

Once I had met Mr Ridgeway the race was on to have the transplant before I had to start dialysis. If you think a transplant is a big deal I can assure you it is preferable to dialysis for me. That shit changes lives. I work full time. I travel, sometimes on a whim and I have other commitments like the radio show and - in a not unrelated twist - attending Saints games to consider. I don’t have time to spend four hours a day, three days a week hooked up to a machine. Even if there are days when I wonder whether that might be better than working.

The good news is I’m winning that race. For reasons that even the many brilliant medical people I have met cannot explain my kidney function started to spike back northwards in the first quarter of 2019. Like Gerry Cinnamon’s popularity it was going up but nobody knew why. From 10% in November 2018 it had recovered to 13% in April 2019, to 14% in May and then again in July which is the last time I had it tested. I am seeing the nephrologist in 10 days time (I am currently under more medical consultants than David Beckham was when he broke the world’s most talked about metatarsal before the 2002 World Cup) and it will be tested again then.

That is normally like running the gauntlet. Not that I have ever run a gauntlet. Or anything or anywhere else. But you understand the metaphor. It’s scary because any test result that they don’t like could lead to a serious discussion about dialysis. I was having those kinds of conversations when my function hit 10% which was especially hard because the weird thing is that by and large I don’t feel ill. I don’t feel great which I’ll come to but there’s no nausea. I don’t throw up regularly. I haven’t turned the colour of Homer Simpson. It’s one thing to be told that you have a disease that will kill you slowly without transplantation, it is quite another to get your head around this fact when you still feel fit enough to go about the rest of your business. I don’t want to feel symptomatic of course but I do sometimes think it would help me make more sense of the whole thing.

So anyway this time I am a little more relaxed about the result because of the discussions I have had with Mr Ridgeway. Today he told me that they are happy that all the tests are complete and that we can expect to have the surgery early in the new year. I say we because my mum is involved in this also. She’s my donor, which may raise a few eyebrows when you have worked out that given my age she must be getting on a bit too. But that is one of the things that you learn when a kidney transplant is something which is happening to you. It doesn’t really matter about the age of the donor.

They are only interested in the health of the kidney that is being donated. They do other general health checks on things like the heart and lungs of both the donor and the recipient but they are just to make sure that you are both fit to undergo surgery. They are thorough with these tests because kidneys are precious resources and they want to make sure that every transplant has the highest possible chance of success, but I have passed them and so has my mum. I suppose what I’m intimating there is that you just need a decent level of health. It is not about fitness as such. You don’t have to be Mo Farah. Sorry Sir Mo. I wouldn’t want to miss an opportunity to remind the racists and extremists that a black Muslim has been knighted for becoming one of Britain’s greatest ever athletes.

We have one more assessment to get through in November. This is basically just a routine check that we are both entering into this for the right reasons and that nobody is coercing, bribing, blackmail or profiting from anybody in any kind of transaction. And that we are sound enough in the mind to make the decision to go ahead. I’m not quite sure how they determine this. If I were designing a test for this it would include rigorous psychological conundrums like ‘Wigan or Man Utd?’, ‘Have you ever agreed with Katie Hopkins?’ and ‘Do you watch I’m A Celebrity?’.

Oh hang on no, not that last one. My mum would probably fall at that hurdle and we’d have to find another donor and restart the whole process of tests and consultations which, by the time of transplantation, will have been going on for 12 months. That’s another of the hidden foibles of the process. It’s one donor at a time. If you have more than one person willing to donate they don’t test them all at the same time. If anyone is found incompatible for any reason you go back to the start. Like the Chinese team in the Women’s 4 x 100m final at the recent World Athletics Championships in Doha. All of which sounds like a particularly vicious game of snakes and ladders but I haven’t had to go through it so I haven’t spent too much time thinking about the consequences of it. I have other potential donors. My dad is as likely to be a match as my mum because I have 50% of each of their DNA. The only reason that my mum was tested first is that my dad needed an operation of his own at the time that testing began. He’s ok now. Just bad timing.

Incidentally for anyone wondering about the prospects of getting a suitable kidney from a live donor a parent is your best bet. They are highly likely to be a reasonable match. There are now ways of making slight differences work which is another bloody medical miracle. Siblings are also a good bet, or any blood relative. This doesn’t rule out anybody who is not a relative. Plenty of people receive kidneys from sadly deceased people whom they have never met. It just increases your chances of a more positive outcome for longer if you are a blood relative of your donor. Even more so if they are still alive.

The procedure itself is slightly more complicated for me than it might be for others. Due to my spina bifida my pelvis is a little crooked so plumbing in a new kidney is not straightforward. They don’t take a bad one out to put a good one in, like they do with parts on a car. They plumb a third one - the good new one - in and just leave the two malfunctioning kidneys where they are. They are useless but they are not doing any harm. They’re like Taylor Swift in that sense. Though a nephrologist will often look at you, shake his head and breath through his teeth when he sees your kidney function. Like a mechanic checking over your battered car engine except because our NHS is free until the Brexiteers get their way and sell it off to Donald Trump he is not doing it to work out what he can charge you for it.

What is required in my circumstances is two operating theatres. One to open me up and have a quick look around to work out the best way of shoehorning a third kidney in there, and another to then go and get my mum’s kidney and bring it over to me to finish the job off. Mr Ridgeway says it will be ‘a long day’ but I’m guessing he means for him performing complex surgery. We’ll be unconscious and so will know nothing about it after we are asked to breath into the mask and count.

It is afterwards that I face my challenges. I was relieved to find out today also that I’ll only be in hospital for 10 days or so. When I saw Mr Ridgeway he told me he had seen cases similar to mine (crooked spines or to use a technical term biffyness) in which patients had been hospitalised for up to five weeks. I am not a great patient so five weeks on a ward is something close to my personal Hell. But in those cases there were underlying conditions that I don’t have so Mr Ridgeway is not expecting my stay to be any longer than two weeks tops.

Recovery takes on average something between eight weeks and three months if you’re talking about getting back to work. During that time I’ll have regular hospital visits to check that everything is working ok and I’ll forever be on anti-rejection drugs which do what you might expect, stop the body rejecting a kidney which is after all a foreign body entering your system even if it comes from a close blood relative. Taking a lot of drugs is not something I am a stranger to. I don’t mean that in a Pete Doherty sort of way. I just mean that I am already on five or six different types of medication to slow down the deterioration of my current kidneys and help with associated conditions like high blood pressure and that old favourite, high potassium. What’s a few more?

The immediate aim is to try and get through to the date of the surgery without going off sick from work. That should be doable, although I confess it is getting a little more difficult now. The itchiness I suffered in the early part of the year (oh, didn’t mention that, kept me awake night after night to the point where I now use medication and cream to combat it) is enjoying a slight resurgence in recent weeks and any sleep lost through that is a major problem. Even when I do sleep well I find that I get tired far more easily than was the case maybe a year ago. It’s starting to frustrate me that I can be sat relaxed watching a game on TV one minute and wake up the next to find that an hour has passed. Unless I’m busy I find it really hard to fight off sleep during the day. Work helps with that because it gives me something that requires more concentration than NFL Sunday or a Test Match, but I don’t know how much longer that will be the case.

The other major symptom, if you can call it a symptom considering what happens to some sufferers of kidney disease is panic attacks. I hadn’t had one since my last stay in hospital for bowel surgery in April until last night. It could have been due to the fact that it was the night before what I anticipated would be my last appointment with Mr Ridgeway before shit gets real. I don’t know. What I do know is that when it happens I get this odd sense of deja vu, as if everything I am seeing and hearing has happened before. At the same time my heart rate speeds up and it feels like my entire body is palpitating as this weird and unpleasant tingle (that’s the best way I can think of to describe it, like a scary tingling feeling) courses through me. I had a particularly unpleasant occurrence this morning while my mum was in with Mr Ridgeway and I was waiting to be brought in. Protocol, apparently. To prevent any of that coercion and bribery stuff I mentioned earlier. However the fact that I got the news I expected and to be honest that I wanted might be the reason why I have not had one since. I don’t feel like I have been over thinking or worrying about today in the day’s leading up to it. I’ve been too busy at Dave Gorman gigs and Grand Finals. This weekend I’m going to see Ben Elton. I just think maybe sometimes these anxieties are subconscious.

I try and play it down and I hope that anyone in a similar situation reading this column may have had some of their worst fears allayed. That anyone wondering whether or not to donate organs before or even after their own death might be encouraged to do so. But it is still kind of a big deal.

Wednesday 9 October 2019

Dave Gorman And Salisbury

Yesterday I turned 44 years old. To celebrate getting through another year in which I have miraculously avoided dialysis in the way that Soccer AM has avoided cancellation I decided to take a trip to Salisbury. This choice was made for the single and only reason that it happened to be where Dave Gorman was taking his tour on the date of my birthday.

I have to tell you something straight away. This was going to be the first comedy gig that I had actively paid to attend. As far as I can remember it is only the third comedy show I have ever attended, following on from a dreadful Mick-Miller like buffoon at Prestatyn about 15 years ago and - most startlingly of all - a performance by Jimmy Cricket at Blackpool during the 80s. In the first instance I just happened to be at a Pontin’s holiday resort and so faced with a choice of the crap comedian, bingo or pool and in the second I was probably about eight years old and so not in control of the decision making when it came to evening entertainment. My first voluntary visit to a comedy gig has whetted the appetite with Ben Elton’s return to stand-up next on the to do list.

By the way if any of you don’t remember Jimmy Cricket let me fill you in. He was an Irish comedian who wore wellies with ‘L’ and ‘R’ written on them. He wore them on the wrong feet which I’m sure you’ll agree is just side-splitting. He had his own TV show in the 80s on which Rory Bremner made his first small-screen appearance. Cricket’s act was based mostly around mockery of the Irish and starting one terrible anecdote after another with the phrase ‘c’mere’. My own memories of his performance are dominated not by how bad I thought he was but of the actual physical pain that my dad appeared to be in as he sat through it. What made his experience worse was that he was sat behind a man who cried with laughter at every crap quip. This chap has never seen anything funnier in his entire life. I hope he hasn’t laughed more than that since because there’s a reasonable chance it would kill him. This was anathema to my dad who has pretty much despaired of humanity ever since.

I’d toyed with the idea of seeing Dave Gorman before. It just never seemed feasible when his tour dates were initially released due to all the uncertainty with my health. Just by chance I saw an advert for the tour, entitled With Great PowerPoint Comes Great ResponsibilityPoint, when it was extended for a third time due to the demand. The Salisbury show was on my birthday and with an appointment with the transplant surgeon coming up next week I decided it might be the last chance for a while so why the Hell not? Even if it is a four-hour drive away.

The show is based on Dave Gorman’s TV show Modern Life Is Goodish. It’s basically observational comedy using PowerPoint as a demonstrative tool. At the end of the show he actually asks the audience not to give anything away on social media and since this blog sort of falls into that category (that is how you will probably have found it) I feel obliged to keep Dave’s secrets. I wouldn’t want to be that one knob-head spoiling it for others. I have to say given the knob-head ratio on both Facebook and Twitter I’m stunned that nobody has plastered it all over one or both of these platforms. Dave Gorman fans must be trustworthy, reliable types. Either way it is difficult to tell you too much about it but if you have ever seen the TV show you’ll have some idea of the sort of thing he does. If you haven’t, Google it. I’m sure YouTube has some clips. It’s better than Jimmy Cricket.

Before the gig we had a chance to see some of the local hostelries. That is after I had negotiated the obstacles in our not very accessible hotel. The Red Lion is a Best Western on Milford Street in the city centre, only about five minutes walk from the gig venue at City Hall. I’d booked over the phone and been assured that the hotel had an accessible room but that definition appears to be something that hotel chains think they can play fast and loose with without consequence.

The accessible room - such as it is - has a small step up to a security door for which you are given a passcode. I wasn’t on my own but if you are a wheelchair user who ever does find themselves staying alone at this place then you might have fun trying to negotiate the step while also trying to punch the passcode on to the keypad. It’s like fucking Takeshi’s Castle. If you can overcome that hurdle you might just be able to squeeze your wheelchair through the narrow security door then make the tight left turn to the front door of your room. If you get through all that your next challenge is the bathroom which has a carpeted ramp leading up to another narrow doorway. If your wheelchair is any wider than mine it will fall off the ramp. Except it won’t because you won’t have been able to get it through the doors to get inside the room. If you can’t stand up then you can forget about taking a shower also. This despite the fact that they asked me when I phoned to make the booking whether I’d need a shower seat. I’m sure I said yes but maybe they get confused between yes or no like Alan Partridge when he gets that message about whether he would like to continue viewing the adult channels. I thought about going back to reception to ask for one - a shower seat not an adult movie channel - but the controls were not at an accessible height either.

They’ve given me a 20% refund after I pointed out these flaws to them but as you can see that hasn’t stopped me from savaging them on these pages and telling anyone who might be reading who also uses a wheelchair not to book a night at the Red Lion Best Western in Salisbury. Suitably unimpressed we set about exploring those hostelries. We were hungry having skipped breakfast but of course the first decent place we found was a non-starter. There were two lads outside smoking, presumably members of staff, and they told us that the hot food kitchen was not open and to try the cafe just a few metres further on. The closed cafe just a few metres further on. Memories came flooding back of that trip to Prestatyn when we turned up at a pub in a place called Criccied on the one day of the year that they were not serving food. Running out of both ideas and drinking time we inevitably ended up in one of Brexit Wanker Tim Martin’s cheap booze dens known colloquially as Wetherspoons. The King’s Head is your bog standard spoons and we ate your bog standard burgers just to fill a gap.

The next pub was far more interesting. The Golden Mill is opposite the King’s Head, set back from the road across an aesthetically pleasing bridge which crosses the stream outside the pub. Inside it appears to lack character, looking like a fairly common garden variety sports bar with TV screens on every wall. It has high tables on the bottom level which I always find infuriating. This phenomenon is the absolute scourge of disabled people. Trying to transfer in to a chair three feet above my head height is the fastest way to end up in the local hospital so Emma and I end up trying to have a conversation at different heights like Jermain Defoe and Peter Crouch. Hearing each other becomes impossible.

The good news is that The Golden Mill has lower tables on the second level AND a fully functioning lift to that second level. This was a game changer for us so we could finally settle down with a drink. Despite its apparent lack of character The Golden Mill is noteworthy as one of the places visited by Sergei and Yulia Skripal before they fell ill as a result of the now infamous Novichok spy-poisoning affair in March 2018. There is still an argument raging about whether the Russian government was responsible for the attack. Well, I say argument. What I mean is that the UK government of dubious reliability claim to have proved that it almost certainly was the Russian government of equal if not greater dubious reliability, who for their part maintain that they had nothing to do with it. Their state-controlled media hardly referenced it before or since to the extent that a Russian newspaper claimed that 20% of respondents to an independent poll had heard nothing about it. The alleged perpetrators are officers in the old GRU, which is the English translation of the acronym for the Russian Intelligence Directorate. I learned this while watching an episode of brilliant-but-tacky ITV espionage drama The Americans a while back. It was a piece of knowledge that gave me a greater appreciation of the genius behind the makers of Despicable Me and it’s comedy villain.

Our next stop was just next door. The Bridge Tap is another pub which looks nice on the outside but is a plain old sports bar on the interior. If you are looking for somewhere to watch a sports event in Salisbury you are very much in luck. The Rugby Union World Cup is on at the moment so the Bridge Tap is hammering that in terms of advertising. They have a great big Guinness-sponsored rugby ball at the end of the bar to constantly remind you that you are only ever a day away from another kick-infested snooze-fest played out in front of bafflingly huge crowds. England rugby shirts are prevalent here to the extent that they probably call the barman ‘barkeep’ and hold their £50 notes folded between their fingers to attract his attention when they are thirsty in the several hours of down time during a rugby union game. The Bridge Tap also has a prize-winning pointless line in punnage, a red neon sign that says ‘Bridge It Bardot’. Geddit? I get it but I am still working on the reason someone thought it was funny or cool.

Last stop was City Hall for the gig. Just like the Best Western they had assured me over the phone that it was fully accessible. So you can imagine my cocktail of scepticism and anxiety as we trundled down there fuelled by a few pints of lubrication. Thankfully they were true to their word. All one level, no steps, accessible toilets. The only minus point was that they didn’t serve Guinness in the bar so I had to make an emergency switch to vodka and lemonade. I bought a book which I was reliably informed Dave would be signing copies of after the show. Actually there were several books available one of which was a collection of found poems (watch the show, these are a highlight), one was an account of his quest to meet as many other people called Dave Gorman as possible and then the one I bought which was an account of his trip round America in which he set out to buy products solely from independent retailers and avoid all the big chains.

I didn’t stay behind to queue for the photograph and the book signing. I’m not really one for photographs or queueing unless it’s Tommy Martyn or Justin Holbrook. Regardless, the book themes give you a further insight into the type of comedy Dave Gorman does, supported by Nick Doody who also worked on Modern Life Is Goodish. Doody himself was Goodish, peaking with the assertion that Donald Trump is ‘a sex offender who has been rolled in Wotsits’ but rather losing me when he took to his keyboard to sing a song about Batman. I’m not a superhero fan. Neither is Dave, who I will tell you denies that the title of the show - With Great PowerPoint Comes Great ResponsibilityPoint - has anything to do with Spider-Man. Where that phrase originates is one of the many things you will learn if you see the show because as we know I’m not allowed to reveal it here.

I’m not going to be that one knob-head.....